Living with the Obstacles of Lupus

I’ve been going through a lot with the lupus. I’ve been checked for celiac disease by the rhemotoloogist. Thankfully the test came back negative, but he told me I may have to go to a endocrologist if my D level doesn’t come back within the normal levels. I am hoping that it will be normal, but it hasn’t been since 2007 so I doubt it will be now. He mentioned it could be parathyroid which would have to be removed if it turns out to be that.  He took 9 tubes of blood he’ll figure out what’s going on with me. I’m really tired of this vitamin D issue with the lupus it’s not fun at all. He ordered physical therpy for my hip since I’ve been in my wheelchair almost fulltime since November since I cannot stand on it too long without pain. He thinks it’s a pinched nerve causing the pain.

Positive Ways to Deal with Chronic Illness

• Look at yourself in the mirror and say positive things about yourself out loud,if possible.

• I may be sick, but I will not let sickness define me.

• Write positive messages to yourself on post it notes or note cards in your car or house. Do a search online for inspirational quotes or make up your own.

• Wear a little makeup. A tube of lipstick or blush will help you look and feel good. You don’t have to leave the house to wear it. Adding a little eye color to you will help brighten your eyes

• Write positive messages in a gratitude journal. It does not have to be anything big. Write about beautiful things around you such as: the sky, green grass, dogs playing, or an old friend visited.

• Take a short walk is a great way to get outdoors. It does not need to be a long walk.

• Sit outdoors on your porch or patio to observe Mother Nature and your neighborhood. Speak to people walking past your home.

• Join a non-whining support group. A negative group will not help you feel better about yourself.

• Read a book full of inspirational quotes in the morning.

• Get involved in a hobby. Most hobbies can be adapted to your disability.

Beating the Holiday Stress with Chronic Illness Part 1

The holiday are stressful enough without having a chronic illness.  It’s the time of year that I wish lupus and fibromyalgia were not part of my life. I wish I could be the old me at least during the holiday. I’d love the energy to shop until I drop and enjoy the holidays to the fullest. Sure I enjoy the holidays with my family, but it’s hard to be completely part of the holiday when you’re fatigued and full of pain.  The hardest part is not being able to plan anytime of the year, but it’s especially hard during the holiday season.  I try to pace myself, but I tend to overdo myself when I have the energy to move around my house. I have to remember to pace myself every day since I struggle all the time with my energy level and pain.  Pacing could extend my endurance, but I’m always fearful of pain the next day. I have to remember that chronic illness may slow me down, but it doesn’t mean I cannot enjoy the holidays at a slower pace.

How do you deal with stress during the holidays?

RIP Auntie

credit: Morguefiles

How much can one person take? I lost my aunt who has lupus to a massive stroke last month. She didn’t talk much about the lupus, but she did go on with her life. She was an ideal patient in my mind since she continued to work even though she struggled daily with the lupus. She had several stokers before a stroke took her.  I admire her ability to not let lupus bring her down.   She worked until she died. Rest in Peace Auntie.  You are forever in my heart. I pray one day a cure will be found for lupus.

Wanted: Chronic Illness Survivors or Family

Ideas:

Are You Gluten Intolerant?

My vitamin D levels are low again so my rheumatologist tested me for Celiac disease. According to Celiac Central “Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.”

After several blood tests, I learned I did not have Celiac disease at this time, but I could still be gluten intolerant.

Being gluten free can improve the symptoms of Systemic Lupus Erythematous, Multiple Sclerosis, Sjogrens’s Syndrome, Crohns Disease, Hashimotos, and  Rheumatoid Arthritis, so  I’m considering going  gluten free.
I didn’t know what gluten was until the nurse told me I was being tested for Celiac disease. Being inquisitive began my internet searches and here are some things I found:

The Annals of the Rheumatic Diseases says   “Some people who have been diagnosed with systemic lupus erythematosus (SLE) may really be suffering from an intolerance to the gluten in their diet”

Do you have symptoms of Celiac Disease? Visit Celiac Central to see if you’ve got symptoms. 97% of people don’t  know they have Celiac disease.

Jenni from Chronic Babe wrote about a coffee shop being  totally intolerant  about illness.

Would you consider going on a special diet to reduce symptoms?

Are You on Stage with You’re Chronic Illness?

By Chronic Chick

Do you feel like you’re on stage while living with your chronic illness? I feel that way a lot because people don’t understand that my strength and abilities go up and down hourly. One day I may be able to clean the house and the next day I’m lucky to be able to get out of bed. It plain sucks, but it’s my life. I’ve lived with it nearly a decade so it has become the norm for me.
Since I’ve lived with lupus and fibromyalgia some days I’m in my wheelchair and other days I’m able to walk around. I used to feel very subconscious knowing what people were saying and thinking about me. I heard- I was faking how much pain I was in or she doesn’t look sick, or it cannot be that bad. I could go on about the snide remarks.

All of these nasty comments made me feel like I needed to act a certain way. And it stinks how other people’s thoughts make you feel like you have to act a certain way.
Finally, I’ve got to that point that the naysayers can say whatever they want to say. I am going to be myself and I am going to be myself. Walk a mile in my footsteps then tell me how I feel living with chronic pain.

Do you feel like you have to meet people’s expectations or feel like you’re on stage?

photo credit: Clarita

Taking Charge of my Health

Last week, I went to the rheumatologist to have my check up and lab work. My lab results won’t be in for a couple of weeks. He did the typical tests including checking my vitamin D level I always call about my test results. Why? I don’t want something to be found on my labs six months later that needed addressing. I know sometimes it annoys the nurse, but it’s my body and my health. It’s my way of being active in my own healthcare. Doctors  make mistakes just like patients make mistakes so I don’t want to fall through the cracks. Ultimately I’m the one that pays the consequences if something is missed. Usually two weeks is enough time to receive my results.

Do you call your doctor for test result? Should doctors call a patient even if the results are negative? It’s your turn.

Midwest Heat Wave Sure is a Pain

The Midwest is being hit by a heat wave this week, which is keeping a lot of people indoors. Today the feels like was 115. When I walk outdoors it’s like walking into a sauna. The heat has kept my daughter and I from taken our short walks in the evening. I’ve been desperate to reduce my pain level so I’m trying to exercise some. The heat has been affecting our air conditioner too. It seems the heat wave has increased my pain level. I don’t know if it’s the heat or a typical pain flare up. This morning my pain level was a 7 out of 10 and I thought I was going to lose my mind. Thankfully as the day went on my pain reduced some.

Do changes in weather affect your pain level?  How do you decrease your pain level? Have you been hit with the heat wave this week?

Writing and Chronic Illness

Would you ever write a book about your illness? It’s something I’ve been contemplating for a while. I don’t really know where to start. Does anyone want to listen to the struggles of living with a chronic illness? The reason I started this blog is to spread awareness of life living with lupus and fibromyalgia, but who would read about my many ups and downs of living with this illness. How would I make it a worthwhile read? A lot of questions go through my mind about writing about my illness. I don’t want to write something that makes people think poor woman living with a chronic illness. Yeah, that was how I thought to start, but I’ve learned to deal with it.
Would you consider reading or writing about living with a chronic illness and its many ups and downs?